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Rare neurogenetic conditions and mental health of families during COVID-19

In this study, researchers at King’s College London examined the impact of the pandemic on the mental wellbeing of children with rare neurogenetic conditions and their parents, compared to the Co-SPACE sample. By comparing parent and child mental health in families with and without children with rare neurogenetic conditions, researchers sought to identify challenges and predictors of wellbeing in this at-risk population to inform the provision of support in the wake of COVID-19 and other major disruptive events. Key findings include:

  • The impact of child behavioural difficulties was significantly higher for children with a rare neurogenetic condition in the first UK lockdown
      • This impact was also significant compared to children with special educational needs/neurodevelopmental conditions, suggesting specific challenges for children with rare neurogenetic conditions (e.g., loss of specialist services)
  • Parents of children with rare neurogenetic conditions reported greater anxiety than parents from the Co-SPACE sample
  • These findings highlight the need for additional support for this population to lessen the impact on family wellbeing during future national crises

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